Rare Disease Day 2025

Today is Rare Disease Day, a time to recognise the challenges faced by people living with rare conditions and the vital role that specialist education plays in improving their care. An estimated 300 million people worldwide live with a rare condition, and in the UK alone around 3.5 million people are affected by rare conditions (Rare Disease UK).

For people living with rare diseases like spinal muscular atrophy (SMA) or myasthenia gravis (MG), access to early detection, timely diagnosis, and equitable treatment is essential. They also need care and support that adapts to their changing needs. Achieving this depends on healthcare professionals having a better and up-to-date understanding of these conditions.

We are committed to addressing the inequalities faced by those with rare neurological conditions by expanding access to specialist education. Over the last few years, we have broadened our educational offerings to include SMA, MG and motor neurone disease, providing expert-led learning opportunities tailored to the needs of multidisciplinary teams.

This week, we launched our new SMA Education Day – a focused, one-day programme designed for paediatricians, paediatric neurologists, neonatologists, respiratory specialists, neurology trainees or consultants, palliative care clinicians, specialist nurses, and allied health professionals. Through interactive case discussions, ethical debates and roundtable sessions, the course equips attendees with the latest knowledge and confidence in managing complex clinical scenarios.

This activity has been financially supported by sponsorship from Biogen Idec Limited. The sponsor has had no control over the educational content or organisation of this activity.

Founded five years ago, Neuromuscular Academy has delivered MasterClasses and webinars in myasthenia gravis (MG), another rare condition requiring specialist knowledge. Last year, expanded our offerings with two virtual courses: one course tailored for pharmacists specialising in neurosciences, and another designed for nurses working in MG or neuromuscular disorders.

We’re continuously expanding our educational offerings to upskill more healthcare professionals and improve the lives of people living with complex, rare conditions. If there is a particular disease area that you want to see improved education in, please get in touch.